By DGHI Assistant Professor Melissa Watt and DGHI Doctoral Scholar Sarah Wilson
We just hosted a workshop in Moshi, Tanzania on the psychological and social issues among women who have obstetric fistula. We sought to share our study findings with doctors, nurses, nongovernmental organizations (NGOs) and public health workers to facilitate discussion and action that can ultimately lead to improving how we care for these women.
The workshop was the culmination of a two-year study, funded by DGHI to examine the mental health of women with fistula who are receiving fistula repair at Kilimanjaro Medical Center (KCMC) in Moshi. KCMC is one of the few health care centers in Tanzania that has the capacity to repair obstetric fistula.
Obstetric fistula is a terrible condition and embodiment of disparities in society and health care. Women who develop a fistula often spend days in labor – either failing to get to a health care setting or being neglected by health care workers at a time when they desperately need a caesarean section. They often wait years with a fistula before they reach repair, due to poverty, lack of knowledge and poor access to health care.
A fistula develops when the fetus is stuck in the birth canal, eroding the vaginal tissue, and produces a hole between the vagina and bladder or rectum. A woman who has a fistula experiences uncontrollable leaking of urine and/or feces and a persistent bad odor. The psychological impact of their condition can also be devastating. Women are often isolated and stigmatized in their communities, and they may have severe pain and gynecological infections. In addition, they are dealing with the painful memories of the labor experience that led to the pregnancy, the loss of a child and the possibility of never being able to give birth to another child in a culture that highly values childbirth.
During the workshop, we shared our finding that – not surprisingly – women with obstetric fistula had higher levels of depression and more symptoms of post-traumatic stress disorder compared to women without fistula. We also found that they had lower social support, which may either be because they had low social support before the fistula or lost support due to the fistula. Quite interesting and unique to this study, we learned that women with fistula had high levels of shame. They felt worthless and unacceptable, and they commonly used negative coping strategies like self-criticism and giving up.
However, we were surprised to find that disclosure was a big issue in the study. Despite their obvious physical symptoms due to leaking, women spent years hiding their condition from others, keeping themselves sequestered in their homes and denying themselves food or water to try to prevent it. As we reflect on these findings, we can’t help but put ourselves in the shoes of these patients – to imagine what a terrible impact this must have on their lives.
As we shared these findings, workshop participants noted how this resonated with the experiences of fistula patients they care for at their health facilities. We talked about what it would mean to provide “holistic” care to these patients (taking care of the whole person, not just the hole in the vagina), and people had ideas about the need to address the multiple needs of these women in care. One suggestion was to collect information on the patient’s life history in addition to the physical and clinical history. Understanding the woman as a whole person would help to identify an individual care plan that includes mental health counseling, pastoral services, referral to other clinical services and linkages with relevant NGOs.
Of course, the glaring challenge is health care resources. Tanzania, like most African countries, experiences a severe shortage of health care workers. It makes the implementation of anything beyond the basic clinical services difficult to provide. However, participants kept coming back to the definition of a “cure” for fistula, and what “care” means. There seemed to be consensus that if the broader psychological and social needs of these women were not met during the time she was in care, then the health care setting was not providing the best care for the woman.
We spent the next few days at KCMC, working with the Department of Obstetrics and Gynecology to talk about how our study findings and the workshop discussion can inform both the provision of obstetric fistula care, as well as the next important research step.
It is wonderful to be here and humbling to work with people who have dedicated their careers to caring for this vulnerable population.